Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Wednesday, December 31, 2014

2015 Resolution for CDH Awareness Day Proclamation?

Have you made resolutions for 2015?  Are you going to?  How about making a resolution to write your Governor and request March 31st Proclaimed Congenital Diaphragmatic Hernia Day in your state and/or your Mayor for your city/town?  We have the documents for you to either mail in or copy and paste into email or website contact forms to your state authorities.  Note:  If your governor was just elected into office this past November, please wait until they are sworn into office. Email for the documents! 

Note:  As always, you keep the Proclamation when it arrives; we just ask that you send us a picture!  We also have fundraising ideas to help benefit CDH Research and Support! 

Thursday, September 4, 2014

Why I dislike the phrase: "I hate CDH." ~ Opinion

Hate, it has caused a lot of problems in the world, but has not solved one yet. ― Maya Angelou

Often times when an innocent infant who battled CDH (congenital diaphragmatic hernia) dies or a CDH survivor undergoes more surgery or becomes ill and is hospitalized we see comments from others:  "I HATE CDH".  Or "CDH SUCKS."  Very true, the complexities of diaphragmatic hernia do cause death and far too often other struggles for the survivors who continue battling.  It is the birth defect that "keeps on giving" in other ways.  There are so many issues that can develop over a hole in the diaphragm.  Digestive issues, due to organs not developing properly, eating issues due to the early treatments these children endure or the simple fact their feeding or attempt to start later.  (There are many other “side-effects” to CDH too.)  Often times the drugs prescribed to them to prevent reflux or manage their Pulmonary Hypertension cause weight loss or pneumonia.  The parents struggle with maintaining weight on these children so if they do have the next illness or surgery, they have reserves. 

I get why parents and family members "hate CDH", our own daughter's death certificate states under "cause of death":  "complications of congenital diaphragmatic hernia".  I also hated it for a long time.  It is a birth defect that sounds so very simple, yet is so complicated.  Five infants can come into a NICU presenting similarly with diaphragmatic hernias, they will treat them all the same way, same protocols, drugs, techniques and one will die, and the medical staff has no real clue to why.  Other than, "complications of diaphragmatic hernia".  Overall the survival rates are rising, slowly.  They do know more today than fifteen years ago, ten years ago or even a year ago.

When I think of CDH, I think of all these children, infants and their families.  I think of the triumphs and tragedies.  I think of how astounding these children are in life and how amazing their families are to motivate, advocate and love them immeasurably.  I think of my own daughter and how courageous her fight was as I sat there and watched, only able to hold her little hand.  I can't hate CDH.  It was part of my daughter and part of these other children.  I dislike what it does to these children and families.  How can I hate something that brought me the most amazing friends who share their deepest tragedies and feelings?  Oh, sure, I am frustrated by CDH.  Hate is a very strong emotion.  It is an emotion that required a whole lot of energy, to which; I refuse to divert my own.  So, I dislike. 

There is also a beauty in the CDH Community.  When a family is going through hell and their child is fighting or has lost the battle or is struggling - all other families (some silently) send a positive thought, prayer, a comment, email, text or phone call.  Unlike on the news media story feeds where you see less than stellar comments, the comments other parents leave for those in a time of need, will make you smile, tear up or both.  The encouragement and hope radiates through these families and that, my friends, is the beauty of CDH (congenital diaphragmatic hernia). 

Note:  This is just an opinion piece and those who are very early in their own CDH journeys are allowed to wrestle with emotions.  I've done that.   ~Elizabeth

Monday, September 1, 2014

Ice Bucket Challenge is for ALS

Recently there has been an amazing viral challenge all over Facebook and the Internet.  Millions have been raised for ALS (amyotrophic lateral sclerosis) with the ALS Challenge and many have been educated about this devastating disease that has no known cure, no known prevention and very little research.  It is also a rare disease, just as congenital diaphragmatic hernia.  Though more are affected by CDH than ALS – we commend them as a rare disease organization for this campaign and hope it not only brings more funding now but in the future too!  We also hope many will step forward and volunteer their time or services too! We also hope answers are found in research! 

Though the ALS Foundation has also had some microscope their financials – we would encourage you to look at the fact that only 7% of their funding ending in January 2014 was for Administration costs.  The goal most nonprofits should make is 25% or less for Administrative costs.  This means that 93% of their revenue went to their programs to help education, support and for medical research.  That is awesome!  

This said, Breath of Hope would encourage anyone who does the “Ice Bucket Challenge” to donate to the ASL Foundation.  This is not our campaign and we refuse to ride on the coattails of another charity while their campaign is in full swing.  That is infringement.  It is just not ethical in any way, shape or form.  We have worked hard with our original ideas too and understand how it is to be the charity with this original campaign – that went viral – and others infringe upon it and create new days or new twists to benefit their charity.  Again, it is unethical.  We have never done this and refuse to infringe on others doing so borderlines corporate fraud.  (We know that is a strong accusation but if you can’t come up with your own campaigns and piggy back off of others, that is exactly what it is!) 

We are working on a campaign for March which will also involve social media – stay tuned!  It will have a different twist – an ORIGINAL twist and we hope to raise awareness of CDH the way the ALS Foundation has raised awareness for ALS! 
Thank you! 

Tuesday, June 10, 2014

The Worthy Collection - Thank You - New Graphic Design!

For the month of June, Breath of Hope has been chosen as The Worthy Collection's charity for the month!

From their site:

The Worthy Collection is a apparel brand focused on creating positive change throughout the world by coming together with non-profit organizations and charities by supporting them through our passion for fashion.

“The Worthy Collection is a charity-influenced apparel line that enables people to give back to society. The companies founders intend to use art and fashion as their primary vehicles to be at the forefront of positive change and to create a “giving movement.” - Chris Worthy

They created two designs on their shirts to sell - a portion of the proceeds will benefit our programs and services - and The Worthy Collection is also a nonprofit too - your purchase will benefit both!

Go to this link to order:

Here are some examples of their work:

We hope you like them as much as we do!  Again, these are only available through the month of June! 

Tuesday, March 4, 2014

March! It is Congenital Diaphragmatic Hernia Awareness Month!

For seven years families across the United States have been writing their Mayors, Governors and other officials requesting Proclamations to bring awareness for congenital diaphragmatic hernia.  We have always known that from awareness brings more research.  Over the last few decades survival rates have increased from 50% overall to about 67%.  Our NIH is also more involved thanks to the many families who have contacted their legislators and made them aware of this often unheard of birth defect.  It is through the efforts of families and friends who have fundraisers to help families, raise awareness or raise funds for medical research that we educate our communities.  One day we hope families who contact us will have at least heard of CDH prior to their newborn or unborn child being diagnosed.  

This is also a month that many families reflect on the experience of the diagnoses, of when they first became aware of CDH.  To be told your unborn or newborn child may die is not what we expected to hear when we had our ultrasound or gave birth.  Families who have had their child choose wings over feet want to educate others not just in their child’s memory but so others are perhaps more prepared than they.  Those who have a child come home are all too aware of the struggles of taking care of a child with medical needs or if they don’t have them, worried that one of the other accessories which sometimes coincides with CDH will appear.  Some say they “hate” CDH or CDH “sucks”, no argument there it is something battled every day by organizations, hospitals and families.  We hope one day it is more manageable and less mysterious so doctors will not have to tell a family, “we have done all we can do”.  

There is a hidden oasis in the diagnoses, the people and families you meet through the experience are the people you want in your life.  Strangers from across the nation will step up and help when some friends may have bailed on you.  The doctors and nurses we meet on our journey we learn the profession chose them, they go the extra mile and they work hard so all families will bring their babies home.  Their hearts are in it.  

As you reflect on your own awareness this month, also reflect on all the blessings and amazing people who have been brought into your life through CDH.  Congenital Diaphragmatic Hernia is twofold, bad and good – just as life, it is how we roll with it that makes the difference.

If you would like a graphic ribbon with your child’s name on it, as below, please feel free to email or Private Message our Breath of Hope Facebook Page.  It is a pleasure to make these for families – they are yours to use any way you wish and we are happy to enlarge them or provide different file formats if you need them for shirts or printing! 

Sunday, February 23, 2014

Rare Disease Day - February 28, 2014

Breath of Hope became a member organization with NORD (National Organization of Rare Diseases) in 2010.

By statistics alone congenital diaphragmatic hernia (CDH) is considered a rare or often overlooked birth defect/disease.  For those of us who have had children ten, fifteen and even twenty years ago we know the availability of treatments for CDH infants and survivors has increased.  We know overall the survival rates have also increased to 60% but still not where we would like them.  We also know there are more research studies dedicated to diaphragmatic hernia and pulmonary hypertension today.  We also know that adult survivors seeking medical treatment and long term follow up care are limited.  Most practicing physicians outside the pediatric world have very little experience.  Without collaborating with organizations such as NORD, we would not have the advancements today.

A rare disease in the US is one that has less than 200,000 patients in the United States.  CDH falls into that category.  Pulmonary Hypertension (PPHN) also falls within that category and a high percent of CDH patients have PPHN.

There are 30 million Americans who are affected by rare diseases.  This years international theme for Rare Disease Day is "Join Together for Better Care".  As we celebrate on February 28, we recognize there have been many advancements in medical research and policy developments which give hope to those families affected by CDH and other rare or often overlooked conditions. 

Alone we are rare, together we are strong™

You are welcome to go to this link Press Kit with free downloadable graphics you can share on your blog, Facebook pages or other social media. 

As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community. - See more at:
this year’s international theme is, Join together for better care! - See more at:
this year’s international theme is, Join together for better care! - See more at:

Saturday, January 25, 2014

We Need More CDH Organizations

Did you know that according to Guidestar there are only three nonprofit organizations for congenital diaphragmatic hernia?  Guidestar may not have new charitable organizations listed or those who have not submitted their information.  How many organizations are there for spina bifida?  One hundred and fifty-four listed in Guidestar and two hundred and ten for cystic fibrosis.  Ask yourself this question, why are more in your communities not aware of CDH? 

What truly is the problem?  

We need more community organizations who work within their areas and with their hospitals to help families and further research from all over.  Local organizations can give back within their own communities and are more aware of what families will need when faced having a CDH baby.  They can outreach to other community organizations for help and resources and work with the hospitals and physicians in their areas.  

Breath of Hope will continue to provide the services we do and the programs we have but we will also be working to help others start up their organizations if they have the desire, enthusiasm and commitment to do so.  Please feel free to contact us at and we will be happy to help you!  

Enthusiasm is one of the most powerful engines of success. When you do a thing, do it with all your might. Put your whole soul into it. Stamp it with your own personality. Be active, be energetic, be enthusiastic and faithful, and you will accomplish your object. Nothing great was ever achieved without enthusiasm. ― Ralph Waldo Emerson